Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Tuesday, February 21, 2017

Four Weeks in Coming

If you live with a chronic illness, than my guess is that you've had AT LEAST one incident of insurance company frustration or pharmacy confusion or inconvenient doctor absences. If you're me, then you've likely experienced all 3...at once...right when we had major stuff to resolve...seriously, if dealing with being sick every day wasn't a full time job itself, then spending hours on the phone certainly is.

Since my recent flare started back in November, we've been desperately trying to get things back under control and me back to where I was in September and October when I went to Disney and Yosemite. Despite having no idea what sent me into this downward spiral, we still had to try SOMETHING as I was rapidly losing all the progress I made from Feb-Oct of last year.

First up was seeing what we could do about my GI tract. Since initially, the first symptoms to reappear were GI issues, that was where we went. After my admission just before Thanksgiving, we knew something had to give and fast. In December we changed out Herman III to Herman IV to see if that was the answer (spoiler alert: it wasn't). During another admission in January, the GI there said that he felt I needed access to IV medication since it was clear that my gut was just not absorbing my oral meds at that point. A week later, I spoke with my allergist and he agreed. And so began a month long process of trying to get said medications approved...more on this later...

In addition to needing IV meds, we also realized that my time with the GJ tubes was rapidly coming to an end. For multiple reasons, it was time to separate my G and J tubes, and at the end of January, I had surgery to change Herman to a G button and to create a new stoma for Sherman, my new J tube. I am happy to report that this surgery DID resolve all the tube issues I had previously been having. It did nothing to improve my absorption, but I do now have a referral to a pancreas specialist who I will see in April. Hopefully we'll be able to get to the bottom of some of these issues, but in the mean time, the IV meds because even more important to just get me to that appointment.

Before I get back to the long, drawn out, complicated, frustrating, confusing, month-long process of figuring out how to actually get the IV meds that my doctor had prescribed, here's a little background ...since this flare started, I had not gone more than 5 days without being in the ER or hospital (until this past week!!! Read on to find out the length of my current streak!). When I was having all the tube issues, if I started to have a bad mast cell reaction I would go to take my emergency medications. Half the time my tube would be kinked, clogged, or for all intents and purposes just not working. This meant I had no way to stop the snowballing reaction and ended up needing my epipens way to frequently.

After just 6 weeks of relentless mast cells, on going reactions, and way too many ambulance rides, my peripheral veins were shot. One particularly bad reaction I ended up needing 3 doses of epi simply because they couldn't get IV access in time to prevent the rebounding reactions. Five days before Christmas I had surgery for Mort the port to give us central access for the majority of the ER trips and hospital stays so we could salvage what was left of my peripheral veins for these actual anaphylaxis emergencies and the EMTs. Having Mort meant that the option of IV meds that the GI doctor had recommended while inpatient was an actual possibility. The only challenge was just figuring out how it would actually work...

And so began the fore-mentioned month of frustration, confusion, and me realizing that I appeared to know more about the inner workings of my health insurance company than the actual employees did. At my appointment in January I got a prescription for not just IV meds, but also at home IV fluids and electrolytes. Since he was in the same hospital system as the infusion pharmacy we were going to use, it *should* have been a simple matter of putting the orders in their online system. And for the fluids and electrolytes it more or less was. We had a minor hold up with them not wanting to approve home infusions but wanting to have me come into an infusion center. The other issue was them not wanting to teach Nick and me how to access Mort ourselves which we felt was important for my overall care and independence. We got that straightened out *relatively* easily. The main hold up was the IV meds...

First time accessing my own port!

Now, let me explain that the IV meds my doctor has prescribed are NOT protected substances. One can be bought by 10 year olds OTC (benadryl) and the other is given like candy to patients going through chemo and other conditions likely to cause nausea (zofran). They are not narcotics, they are not controlled, and even my doctor commented that he watched someone try to OD on one of them and only ended up sleeping for hours and a serious cotton mouth. Yet when we tried to get these things approved, it was way more complicated than we would have imagined. The infusion company providing the fluids and electrolytes said they only provide benadryl as a pre-treatment option before antibiotics or other infusions known to cause potential reactions. They could not provide it as a stand alone order...even with my doctor's prescription...

So that meant we had to figure out another way to get the IV meds. I already get my Xolair from a specialty pharmacy through my insurance company, so we thought that might be our next option. Depending on who I spoke to, I was told that we could get the meds there and that I couldn't. Talk about confusing...it got even more confusing when my case manager with my insurance company was told different information than I was...

It took two weeks, but we finally figured out that yes, the specialty pharmacy was in fact the place to send the scripts. The next hurdle was figuring out whether or not the meds would be covered by my policy. Again, mixed messages...first I was told it would be covered as a Tier 2 medication, then my case manager was told that they wouldn't be covered at all. The next morning I called the pharmacy to start the appeal process and instead of being told how to go about filing the appeal, I was told that the meds had not only been approved, but were covered at 100% and had already shipped!

Unfortunately, because they are IV medications, they had to be shipped to my doctor's office unless there was additional authorization from my doctor to ship directly to my house. We figured this was just something minor to resolve until I called the office to pick up the meds...only 1 vial had shipped...and that vial was only a single dose...of course this happened on a Friday, too...

Monday morning, I thankfully had an appointment scheduled with my doctor in addition to my standing Xolair injection. By the time I left, we *hoped* we had finally gotten everything resolved. I gave the specialty pharmacy until Wednesday to process the new scripts. When I called they said that yes, they saw the new scripts, but it was still showing that they had to ship to my doctor. Another call made to my doctor's office...side note, the nurses can now recognize my voice before I even say my name...

They called me Thursday morning saying they spoke to the pharmacy again and confirmed that there was authorization on file for it to ship to my house. Back to the pharmacy...I was told, yet again, that I needed additional authorization to ship to my house...we went back and forth a couple of times before they finally found it buried in my file. Then I was told it would be 3-5 business days of processing. I very nicely pleaded with them to expedite things. I explained how long this process had been and how badly I needed these meds. The lady I was speaking was very helpful, and 30 minutes later the 3-5 days worth of processing was done. She told me they would ship out that afternoon and I would have them the next day!

When nothing had arrived by 4 pm the following day, I figured that yet again, they had shipped to my doctor's office and I'd have to wait until Tuesday (why does this ALWAYS happen on the weekends???). At 5:30 pm I got a call from the pharmacy...the meds had not shipped out on Thursday like they had originally told me because they discovered they were out of one of the meds. They DID ship out on Friday and would arrive before noon on Saturday. At this point I wasn't believing anything until I actually had the meds in my hands...

Thankfully, I am very happy to be able to report that the meds did, in fact, arrive Saturday morning around 9 am. Since then, I have already had the opportunity to use both the benadryl and zofran in situations that otherwise might have escalated to anaphylaxis and uncontrolled vomiting. I wish I was not in a place where I need IV medications at home, but right now, I'm so very thankful to have this option.

A MONTH after this process started, it has finally been resolved...I understand there have to be policies and procedures in place, but I'm not so sure they are working in the best interests of the patients...it should NOT have been this difficult! How many epipens could have been avoided in that time? How many ambulance rides would not have been needed? I could write another whole post on the insurance issues that arose just with this issue (and every issue I've had could be its own blog altogether...), but I'll spare you the gory details. =P

Instead I'll end with sharing that I now have a new record!! I'm going on 9 days without an ER trip or ambulance ride. That is largely due to having these IV meds, and we are hopeful that in having benadryl and zofran as options, this streak will continue to increase!